Chris & Nichole Ontis Fundraiser

Hello Friends!
As we all know Chris & Nichole have been going through a lot and could sure use our help!
We are creating this to help cover medical bills
and help with getting further genetic testing
needed so that the family can focus on paying
daily bills and not feeling so overwhelmed
in medical needs. 

Read below for more info. Thank you so much
for helping and God Bless. If you can’t donate a
prayer for them would be great!
Thanks so much!


from Nichole:
Update of Chris to Explain his Medical Condition:
I have had so many questions recently about Chris and his condition. We have been so busy in survival mode the past few years that we forget people are not aware of all of our changes. I am overwhelmed by the kindness and thoughtfulness of so many people and I just want to thank you. This will be a LONG POST, as we want to explain it and provide answers to those who care! As of right now, we are stuck. After a LONG medical journey, we know from the Mayo Clinic that Chris has cerebellar ataxia. His cerebellum is structurally changing (shrinking) as is noted in MRIs. The cerebellum of the brain is responsible for balance, walking, standing, motor control, swallowing, talking, and so much more. His symptoms are 99% consistent with a VERY rare condition called Spinocerebellar Ataxia 14 (SCA14) that he was linked to in one of the expensive genetic tests that he was involved in. Although there are only around 25 people (we were told) in the WORLD that have this specific type of cerebellar ataxia, their findings do not exactly match his, so they will not definitely say he has the condition. We have to go through more genetic testing, and most likely a process to have his results put through steps to determine it ‘clinically significant’ just in case (please, Lord no) anyone else in our family, or the world would have the same genes appear within their testing, they would not have to go through what we are going through to be diagnosed. We were told that there is no treatment. Our goal is to manage his symptoms and try to keep the skills that he has for as long as he can. He will eventually end up in a wheel chair, but we do not know if it will be tomorrow or in 15 years. If we keep him healthy he can live up into his 80s, which we were VERY glad to hear! He does have a poor immune system, so I am very concerned about him in the upcoming events with me still coming in and out of the home from work. Please keep us in your prayers!

How It Affects Us Now:
Chris…..he is the same wonderful person I knew the day I met him. He just has a lot more on his plate to think about. I try to keep things from stressing him. I don’t like him to be stressed because it causes him to have these moderate-severe body and head tremors that make me want to cry. Some days Chris has good days and the symptoms are more mild. Those days aren’t that often. Basically the ataxia causes him to have weakness in the legs, trouble walking, unsteadiness, NO balance, if he is standing and you push on him-he will fall over or trip, Parkinson’s-like tremors in the arms/ torso/ head and neck, jerky unexpected movements that occur in the arms and legs out of NOWHERE that can be dangerous, chronic fatigue in which he can sleep for up to 3 or 4 days, irritability, very little tolerance (sorry Caden ), trouble thinking clearly, inability to walk for very far, inability to stand for very long, new trouble with blurred vision, dysarthria (slurred speech), swallowing (choking on some foods), poor memory, inability to tolerate heat or cold weather, and severe depression. He has had so many injuries trying to do small things around the house that he has basically given up. Each attempt ends up with an injury or a new medical bill, and it just doesn’t seem worth it. He now has a torn knee requiring surgery, although he does not have the balance to be able to stay home alone and get through rehab alone. He requires physical therapy rehabilitation services although Mayo Clinic recommended neurological balance based therapy for his ataxia which we cannot afford right now. He is still driving, minimally, on good days. I do not want him driving to St. Louis for appointments while I am at work, so that has to wait. He is extremely hard to wake up, so I do not schedule anything for him to do during the day when the kids are not at home.
All of our bedrooms are on the second floor. Chris has difficulty climbing stairs, therefore he has slept on the couch in the living room for the past two years. We have long term plans of turning our screened-in porch to a bedroom on the main floor for handicap access, but that is not financially a possibility right now. Despite the fact that Chris has lost the ability to do almost everything he loved; socializing, his friends, his carpentry, working outside, managing work/large construction jobs, all things construction, riding 4-wheelers, shooting guns, riding bikes, hiking in the woods, boating, canoeing, ‘talking shop with the guys’ at Regal Beagle, talking to and helping anyone and everyone like he has known them his whole life, telling stories and joking and laughing for hours, and just being out and about, he has really made it through this journey better than I expected.

Me: In September 2017 I was injured and still suffer nerve damage in my neck that affects me daily. During that time, I was off work for months and we used our ‘emergency money’ to get by. Once I returned to work part-time, Chris’ condition progressed, I am guessing from the stress. Chris has not worked full-time since February 2018. He attempted to do side jobs, although the condition, chronic fatigue, continued injuries, and severe depression of dealing with this situation made it impossible. In September 2018, I began working two jobs that are 50 minutes from our home. I work 6-7 days a week. I drop our son off in the morning at school and come home in time for bed. I check in with Chris on the phone during my ride home, and some days eat when I get home late, tell Chris ‘good night’, and I am out for the night. I am tired. But I am also blessed. Without these two jobs in our lives, we would have lost our home. I am thankful, but I am also sad. I have missed over a year in my children’s lives and I feel as if I am failing my husband. I know I am keeping a roof over their heads and attempting to pay the bills, but I watch as he sits on the couch and his muscles wither away because no one is there to stretch him and walk with him, and get him into specialized therapy.
My son is sad, he is struggling in school, he is angry, and he doesn’t understand. He needs his mom. But he also needs the security of a home, food, and medical healthcare. It just isn’t playing out the way we wanted it to.
My 16-year old daughter works so hard because she is basically me now. She babysits to pay her own bills, her gas, her food, and her clothes. She does all the laundry, picks up the house, keeps things in check, makes sure her dad has things he needs, all while attending youth group, maintaining straight As, donating time with homeless meals, actively participating in Future Leaders of America, and having a social life. But even though she doesn’t tell me, I know she is stressed, sad, and worried. I feel guilty.
But overall, I have learned to trust God. I have learned that God put us here to help us. God is helping us every day and in every way. I trust him. I feel him in my life and I feel his love in our relationships. I am not mad. I would not go back. I would not change. I will trust.

Disability:
One of the biggest questions I get is “Doesn’t he get disability?” Right now, ‘No’, but I hope one day he will. He tried so hard to think he would get a treatment, that they would have answers, and he would be able to work again. He had a lot of hope. Chris has been a union carpenter for 25 years. He began as a carpenter and advanced to higher positions running work for construction companies, finishing his career as a project manager and he LOVED it. After many trips to Mayo Clinic and consults with his doctors, we decided that it was really our only hope to get through and for him to have any way of a meaningful life. So in June 2019 we applied. When we applied, we did not have the genetic testing information as we hadn’t had that specific appointment information yet. Apparently that set us back in the process. We finally contacted a disability lawyer, although we were advised that due to his young age we may be denied three times and this could be drug out a while. Each denial process could take up to 18 months. What is sad, is that if he had a definite diagnosis of SCA, it would speed up the process because it is on the ‘Compassion Care’ list through disability. The lawyer is not currently giving us any hope for upcoming news. We just keep praying.

Insurance/Medical/Financial:
Yes, we have insurance. I currently pay around $1,200 a month for our family insurance. I then also have a $6,500 out of pocket expense each year. We easily blew through that last year. Then there was another expense but I quit counting, because honestly it is so overwhelming. We still owe on medical bills from some of the first 3 neurologists, tests, and who knows what medical necessity when we were trying to get answers in 2016-2019 before the Mayo Clinic. We currently owe the Mayo Clinic about $6,000 to 21 different providers. At the end of last year, I had to deny any further genetic testing through the Mayo Clinic because we could not afford it and that was after we had already paid out the $6,500 out of pocket. I am not sure what the cost would be now to move forward. But up until that point, they had ruled out Chris’ father’s family from being the contributing gene. At that time, there were two different tests that they could continue to complete. The testing will never give us hope of treatment, but will definitely give us hope of finding out where it came from, and if it will show up in others in the family. So keep us in your prayers for this as well!

Testing:
What we learned was that when you go to a new neurologist, they all wanted NEW TESTING which meant NEW TESTS. NEW POKES. MORE MONEY. Chris has had extensive….
MRIs, CT scans, spinal taps, blood work, nerve conduction tests, visited regular neurologists, ALS specialist, motor neuron specialist, therapy teams, movement team, speech therapist, etc. He currently has excessively high blood pressure, that can’t be explained, that we have to watch from going too high when just going to a doctor’s appointment. He stays on our couch, he watches t.v., and will answer text messages or calls when he is awake. Please feel free to give him a call or message, he would enjoy it!